Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: sanjaydawer1 on April 17, 2017, 10:04:34 AM

Title: Gene Therapy:: Thalassemia Major in India
Post by: sanjaydawer1 on April 17, 2017, 10:04:34 AM

Dear All,

Is there is any update on Gene Therapy for Thal major in India.

Which all the centres are conducting the same & what would be approx cost.

I have understood that this is every effective with Thal Major, does anyone have some experience with it.

Kindly do let us know your feedback.

Regards
Sanjay

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: BabyRiya on April 20, 2017, 10:11:19 AM

Would lupracept be available before gene therapy?

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: Manal on April 20, 2017, 05:41:26 PM

Yes, I believe so. I have met Dr. Piga last November in Jordan in the pan middle east thalassemia conference and he said that it could be available in three years. Actually they will start the clinical trails with pediatrics (age 0 to 18) in few months too.
People working on this medication will be visiting us in our thalassemia conference on the 10th and 11th of May 2017. I will be updating everyone

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: BabyRiya on April 22, 2017, 03:11:37 AM

You are a ray of hope.  I talked with chop today and they are doing some kind of adult trial now and. I publications available yet. Anxiously waiting for results. 

Which conference in May?  Where is it could you please give details?

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: Manal on April 26, 2017, 05:41:43 AM

The conference is taking place in Cairo, Egypt, it's our annual international conference for thalassemia. I will keep you updated
Manal

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: catchR on April 26, 2017, 06:35:12 AM

Will eagerly await your update Manal from the conference...

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: BabyRiya on April 28, 2017, 01:25:07 AM

Thanks. I will go to the parent conference in md this July hopefully will hear something

Title: Re: Gene Therapy:: Thalassemia Major in India
Post by: Sunny2701 on September 30, 2018, 08:31:59 PM

Quote from: Manal on April 26, 2017, 05:41:43 AM

The conference is taking place in Cairo, Egypt, it's our annual international conference for thalassemia. I will keep you updated
Manal

Hey Manal, when you get a chance, can you share the update with us